Saturday, June 15, 2019

Fathers Day Song

I've been so many things
From a bastard to a King
Spent days that would make you cry
And others to make you sing

One too many challenges
Traveled one too many roads
My bones became too weary
Carrying one too many loads

Above it all you needed me
Regardless of the rest
You only knew you needed me
And you had to have my best
You had to have my best

Empathy is just a slogan
That's sold without a thought
We will stand right behind you
Til the next time we've been bought

We care for the least among us
As long as we See it pay
When it doesn't fit the right agenda
We quietly make it go away

Above it all you needed me
Regardless of the rest
Even when society failed
You had to have my best
You couldn't live without my best

Even the heroes found among us
Are tied by kryptonite
Red tape and limitations
That keep us up at night

ISPs and meetings every month
Psycho-babble that fill our brain
We gather up in meeting rooms
Just to say the same shit over again

Above it all you needed me
To keep a level head
When the questions got too big
I'd answer them instead
I had to answer them instead

So to you my baby boy
I pledge to always know
Regardless of the world outside
How to keep us all in tow

After all it's only you
That needs me to come through
The world may try to break us down
But in the end it's only you
In the end it's me and you
All we have is me and you



Monday, June 10, 2019

Still Struggling

As noted in a previous post, Tyler is currently struggling with his ability to control his behaviors.  We hate it for him, and we hate it for everyone else that is trying to help him.  It's a helpless feeling knowing something is wrong with your child, and not being able to make things better.  Its worse yet when the people trained to evaluate and calibrate his medications appear to be sleeping at the wheel, or worrying about bureaucratic details more than serving him as they should be.  I'm sure every special needs parent has had those moments where they want to grab someone by the collar (I'm being kind) and shake them while screaming "I don't give a damn about anything else other than making my child better!"

The girls and I decided to spend some time with him after church yesterday.  We had him and his caregiver meet us at the park, and we picked up subs along the way.  His mood in church seemed pretty good, although he seemed tired and nodded off during the service. The park was busy but we found a nice shaded table to sit and eat.  It was beautiful out with ample sun and a breeze to keep everything nice and cool.  We were all talking about how he was doing when I suddenly got a hard kick to the leg.  It startled me more than anything. Its highly unusual that he ever strike me, and this was completely out of left field.  We went from calm to red alert in a second.  My reaction was to get him right up and start taking a walk....he always loved to walk.

At this point I found myself falling into every old habit I ever had.  I watched every movement he made looking for a physical sign that would tell me what is wrong.  He wasn't cocking his head back so there is no danger of his shunt malfunctioning.  He isn't pushing his belly either.  But his balance is extremely off.  I also became concerned at how quickly he tired, as he always outpaced me with no problem.  I decided it was best if we shortened the walk and allowed him to head back home.  But not before one quick selfie...

I find myself in a familiar mixture of worry, sadness, and frustration now.  Its amazing how quickly I can be taken back to those emotions.  We all made so much progress over the last 2 years, and now it feels like its all gone.  It will probably sound juvenile to say this, but it just isn't fair.  Tyler has had more than his share of difficulties in this world and he deserves to be content and at peace with his surroundings.  Something which seems so little to ask shouldn't be so hard to maintain. It feels like all 4 of us deserve to someday have that peace of mind that continues to merely come in temporary periods.  

I know I have to dig in and fight for him.  I need to make some calls to his doctors and start pitching fits until something is done with his medications to help him get through this.  It just feels like today I'm trying to run with feet of clay.  I want to be angry so that it motivates me, but I feel more sullen and defeated.  

Tyler needs me.  Tyler needs those around him to rise up when he cannot.  There has to be actions made on his behalf and I swore to him as his Dad and his Guardian that I would always be the last line of defense for him...a line that would never break.  

Its time to pick up the shovel and start digging.

Thursday, June 6, 2019

Summer Swimming Safety

This is the season for many fun activities, going to picnics, cookouts, sports, and swimming.  I am one of those people that loves the summer and tries to be outside as much as I can.  For those of us living in the Northeast, its a seemingly short summer season that requires us to take advantage of every warm sunny day we get.  My daughter is the same way, asking every day since April if she can get into the pool.  Most kids are drawn to the water like moths to a flame.  Special needs children are especially drawn to areas of water.  With this in mind I wanted to talk about water safety for EVERY child in the hopes that raising awareness can lead to an amazingly fun, and safe summer.

This post is dedicated to Judah Levi Brown.  I learned about Judah through an article which appeared on Facebook, from TODAY Parenting Team community site.  I was immediately touched by the words on the page, coming directly from his mom Christi's heart.  I asked if I could share her message with my readers, and she graciously agreed.  This is Judah..



Judah reminds me of my daughter where it involves water.  Most of the time I have to drag her out of the pool even when she is shivering or her skin looks like a wrinkled shirt.  And while reading the article I found myself nodding my head, agreeing with all of the things that were done to ensure his safety.  Swimming lessons...check.  Attentive adults...check.  Floating device....check.  Practiced rescue techniques....check.  I've covered all of the same angles with my own children.  Being a loving, careful, attentive parent should really always be enough to protect my child.  Until fate finds a way of unfairly and unjustly robbing us of what we work so hard to protect.

Judah's family was enjoying a BBQ with friends, and the kids were all enjoying the pool.  Judah had done as every other child does, hopped out of the pool, sat, and then decided to get back into the pool.  And in the transition from swimming, to drying, to sitting, to getting back in, he was no longer in his float device.  In a moment more, he was gone.  Despite quick reactions and attempts to keep him alive, Judah was gone.

Because swimming is such a fun activity associated with friends and picnics and happy things, the dangers lie silently in the background.  The truth is that drowning is the #1 cause of death for children ages 1-4.  It is the #2 cause of death for children ages 4-14.  And that boys are 77% more likely to drown than girls.  For every child that dies from drowning, another 5 are treated in emergency rooms for nearly drowning.  

For special needs children, the statistics are even more frightening.  Children on the autism spectrum are TWICE as likely to drown as typical children.  In a study between 2009 and 2011, accidental drowning accounted for 91% of injury related deaths of autistic children ages 14 and under.  An estimated 90% of drowning deaths occur while the child is being supervised.  That statistic is stunning.  There is likely a deadly combination of curiosity and lack of danger awareness that attributes to the increased risk.

So the question remains...how do we make proximity to water as safe for our children as possible?

  • Teach your child to swim.  With that, teach them what to do if they fall in or get into trouble in the water
  • Know your child's personalities and abilities
  • Underestimate your child's swimming ability.  Assume that any child will panic or forget the fundamentals if they run into water trouble
  • Maximize available supervision.  As quickly as an accidental drowning can happen, even the most attentive adult may not be able to track every movement
  • Understand that drowning is generally silent.  It is NOT like you see in the movies where a person splashes and screams.  A drowning child may not appear to be in any trouble until they are under the water
  • Make your pool secure.  A pool should be inaccessible from all sides, including a secured ladder
  • Remove toys from the pool when not in use.  Floating toys are enticing for children to reach for
  • Check for drains and other entrapment hazards
  • If you lose sight of your child check bodies of water FIRST
  • Learn CPR.  The sooner a drowning victim is given CPR, the better their chances of survival
 I'd like to express my sincere gratitude to Judah's family, and the Judah Brown Project for permission to share Judah's story.  Please visit the website at www.judahbrownproject.org. 
To Christi I would like to say your article was amazing, heartbreaking, and inspiring.  Thank you for bravely sharing your story and helping to save lives.

Be well and God Bless.   Tom


Wednesday, May 22, 2019

Dear Sam

Dear Sam,

I know things weren't easy for you in the beginning.  It was hard to watch you wanting to do things but having to make concessions for your big brother.  I want you to know that even during the times you were disappointed I was proud of the way you handled it.  It seemed like even at a very young age you understood that you had to put the needs of the family before your own.  But even as you struggled to understand how everything works, you had a compassion and love for him that only a strong and beautiful person could have.  It is not fondly that I remember how you would scurry under the kitchen table when you realized Tyler was entering the room without me.

Remembering these things makes it all the more special to have spent the time together last week in Florida.  Giving you wonderful and loving memories of your growing up is extremely important to me.  I want for you to understand the lessons of putting other's needs before your own, but also to feel that your happiness is important as well.  

Like most Dad's walking this earth, I wish I could be perfect and I am far from it.  Raising a typical child in the typical world is a tremendous challenge, and with your Mom and I only having experience in raising a non-typical child before you, we are feeling our way through. If you every wonder if we know what we are doing, the answer is "not really...but we are trying".

We measured our success with Tyler in how his basic needs were cared for.  Did he eat well, sleep ok, get some exercise, go to the bathroom ok, and not have any meltdowns?  Then it was a good day.  Let's hope for another one tomorrow.  With you it's much different and more complex.  The basics are not such a concern because you can help attend to most of those yourself.  The concerns are if you are getting homework done, being treated ok, treating others well, learning to be a good friend, and learning the lessons of life in a way that is appropriate for a 10-year-old.  Its hard to measure!  And for most of these things we won't truly know until you become an adult and start applying lessons in your own life.

Then I look at this picture......


Perhaps this picture tells me what I need to know.  I can see in your face the true joy you are experiencing.  There is no sign of a little girl ducking for cover under a table, or struggling to understand how she fits into her brothers world.  This is a young lady who knows who she is and is truly happy.  She is brave.  And she trusts that when she spreads her wings she will be able to fly.  

My wish for you is that you continue to grow and experience the world.  But never forget who you really are.  Never forget that feeling of empathy and compassion that you have for your brother.  Be willing to appreciate what you have, but don't be afraid to challenge the system and ask for more. Never forget that I, your Mom, and your big brother love you with all of our hearts.  You are unique and special. And most of all....smile.  Smile every day like you did on this day.

Be well and God bless.    Tom

Monday, May 20, 2019

Living in the Middle

There was a period of time where we raised Tyler in the non-typical world, along with Sam in the typical world.  If you take that last sentence literally, we were trying to live in two worlds at the same time, which is next to impossible.  This may have been one of the very reasons that we knew we had to secure a future for Tyler that would allow him to live life in the non-typical world.  It also shined a light on why the rest of us needed to secure a future in the typical world.

I believe there has to be an ability to bring those two existences together...a meeting in the middle if you will.  The amount of "middle" you can find may largely depend on the severity of the disabilities, the family dynamics, and so on.  But even where there is a "middle", there will always be two very separate circles.


There are families that live for many years in the middle, and can do so with a great amount of success.  But as this graph illustrates, the middle is often the smallest area, and for many families the most difficult to maintain.  When life is riding in the middle things are in harmony.  When the two circles pull apart, things can go wildly out of balance.  When the balance shifts too far into the typical world, the non-typical person can become lost, frustrated, confused, and more prone to act out.  When the balance shifts to far into the non-typical world, the typical family members can become left out, isolated, and depressed.  In our case we tried to live most of our lives in the non-typical world to accommodate Tyler as best we could.  Unfortunately that also lead to our own issues that went unaddressed.  Without a doubt we had times where we found success in the middle.  But it never lasted long, and the times outside of the middle were brutal.  The hardest thing for me to understand at that time was that when we were living in the non-typical circle, we were not doing anyone any good.  We we over-accommodating him, and underachieving in nearly every aspect of our lives.  Worse yet, attempts to pull him into the typical world were mostly met with disaster. 

Our decision to move Tyler to a residential home was to create worlds that we could all live in, and a middle that we could maintain more consistently.  He had to have a living condition that was tailored to who he really is, and not trying to force him to relate to a world he didn't understand.  We had to have a living condition that allows us to be parents to Sam, be a married couple, conduct ourselves as more functional workers, and focus on our health as we enjoy our middle-age years.  Our middle is now seeing Tyler at church on Sunday's, and taking him out for pizza or Mexican food.  We spend short, but quality time there before everyone returns to their circle.

If you are balancing two worlds, carefully examine where your middle is.  If you can live comfortably in that zone, you are probably in a healthy place at the moment.  But always remember, circumstances will dictate how much room you have in the middle.  If you are living in a middle which has squeezed you to your limits, or you find yourself bouncing wildly between circles, you are in a dangerous place.  Don't be afraid to find alternative ways to broaden the middle, or if necessary, redefine the circles to create all new worlds.

Be well and God bless.   Tom